CAMHS

[cmuir]

Hi

 

I'm so upset, frustrated, desperate, etc and feel like I'm right at the end of my tether.

 

My son R is 7 and has AS. His consultant has suggested she thinks R may have a mood disorder in addition to the AS. His HT, Learning Assistant, Social Worker, Ed Psy, etc - everyone that works with R has said that he's unlike any one AS child they've encountered and have said he's extremely unpredictable and that there's 'something very wrong'. I contacted CAMHS and had our appointment on Thursday. The HT provided a supportive character reference and I provided other recent and not so recent background reports which document his unpredictability, rapidly changing moods swings, etc. I also stated that I wanted to discuss medication since I feel that we've just about reached crisis point - hubby and I are being verbally and physically challenged on almost a daily basis (knives, headbutted in face, hit in face with frying pan, etc). Despite having documented this information well in advance of the appointment, the meeting went exactly how I expected - we're right back at square zero! The psych and OT just didn't listen. To start with during a phonecall prior to the meeting, I said I didn't want to bring R to the appt as myself and family members wanted to discuss things out of earshot of R (I didn't feel it appropriate to do so). In addition, the questions that were asked eg 'oh, you both work full-time and you must work long hours?', I played a sound recording of R very low and pleading with me to provide a kitchen knife so he could kill himself to which psych says 'oh, attention seeking', asked questions as to whether R attends out of schools clubs, etc. It all felt very much like a finger pointing session with lots of leading questions and assumptions being made. I told them that for us respite wasn't a consideration since we're a close family and I felt it would be upsetting for R going out with a stranger (it also would pose safety issues in that the carer wouldn't be prepared for some of his antics). What did they offer? .... Respite and family therapy - I'm so upset and frankly, past being frustrated. None of that actually directly helps R or gets to the root of his deteriorating mental health. I'm all talked out and told them so. I asked them outright why they weren't addressing the issues with R, why they were ignoring the possibility that he has a mood disorder and why they won't discuss medication. They said they want to get more info - I asked why two recent reports from HT, Educ Psych and phonecalls, social work assessment, etc as well as a substantial pile of reports still weren't enough for them to do anything. Again, got no answers. They then offered to do an emotional assessment which would take place over 4-6 sessions. I then enquired who would do the assessment to be told that the OT would do it - surely an OT isn't qualified!!! I cried with sheer frustration in front of them and I actually told them how I felt they still weren't listening or doing anything proactive - all of this could take months, meanwhile I have to watch my child getting worse by the day.

 

Don't know what to do. CAMHS just aren't listening. Advice welcomed.

 

Caroline.

[zaman]

Can you get a referral elsewhere - ie to a multi disciplinary unit that understands autism? It was the route that I went down after bad experiences with CAHMS (but my situation wasn't nearly as fraught as yours sounds).

 

I don't know what the answer it, but you need something very soon. Can the NAS helpline give you any advice on resources in your area?

 

Z

[JsMum]

 

 

Hi, I would write down all your concerns and basically repeat what you have written in this post in a letter of complaint to your local NHS complaints procedures.

 

And request a second referral as you feel that your sons mental health needs are urgent and left unassessed, undiagnosed and untreated is neglectful and Dangerous.

 

I would also look into legal representation and look at some legal help.

 

The family therapy and other courses they have given will help noone if it is he has a mood disorder or other additional disorders because he will need intesive therapies along side family therapy.

 

What about youngminds as they have further information on more assessment processess, or have you thought about going private like the Priory or similair.

 

JsMum

 

[cmuir]

Hi

 

Thanks for the replies.

 

Many thanks for your PMs Jsmum - there were a couple which I've already got bookmarked and are really good. It's amazing how many adults with a mood disorder (BP) that could pinpoint the warning signs in childhood. Frightening really. You've given me some helpful info, so I'll see what happens.

 

Regards

 

Caroline.

[smiley1590]

i been with CAMHS since 14 years old until 18 years old then i was passed onto adult services with deal with MH probs none of it i found to be useful i done most work myself without them but the like to take the effort and limelight away from me i used to be angry,violent like your describing with your son! my parents had to physically restrain me! ended up in hops self-harmed with a knife physically lash out at my mum iive turned it around down to my own determination and willpower! it was out of frustration and anger of having this! and feeling way i did growing up with it so hard! i think i could be classed as BP but because AS in the way it hides my other difficulties i suffer with depression,anxiety,paranoia etc but CAMHS or adult services could have supported me so much more they think just beacuse they read a book they know it and completely understand my life and my problems! my mum was scared for me doesnt realise how much courage it takes! to live our life day in and out! i deal with my MH on my own and to be honest i HATE the way we have to put up and shut up! and pretend everythings ok! it disgusts me its so bad the sitiations we put in society,government! it makes us for guilty for having autism isnt our fault we didnt ask for that!

 

the NAS worker is my own way out of this mess -complicated but feels like no-one wants toi really help you anymore and thats sad way to be igorning people who really need to be listen to their personal experiences and stories but you dont jmy pyschtrist sits there n chucks me out after 5-10 mins of seeing him how can you call it worth it! money time! i counsel myself through things! and shoudl that be the way! its time to speak up fight! i had enough im sick of being igorned and feel sometimes like poeple unless affected dont want to know why has it come to this! somedays im so desperate to be heard! i still have MH probs AS doesnt just go away disappear sooner they get it the better the system will become stronger and helpful! im think it disgrace the government can fund for everything but vital needed services! apppauling in my eyes why we made to pay and suffer its unfair and injustice!

[Elouise]

I would strongly recommend contacting 'YoungMinds' as has already been suggested.

 

Nathan was behaving in a similar fashion but not until he was 12+.

 

He has since had a diaognosis of severe anxiety disorder, and a tentative bi-polar diaognosis. The poor lad swings between long crushing depressions that floor him and th occasional more muppety ups.

 

If you have not been refered to tertiary CAHMS [Regional unit] for a second opinon try and push for one. Secondary CAHMS [usually in larger local hospital rather than specialised child and adolescent unit with beds!] did not have the level of expertise to diaognose Nathans additional difficulties. He had to be referred to tertiary CAHMS where his problems were looked at very seriously.

 

I would not let an OT do an 'emotional assesemnet' on my distressed child either.

Nathans was done by a clinical psychologist and a specialist peaditaic nurse [child equivilant of a Psychiatric Nurse] with support from a Snr SaLT with a specilization in ASD.

 

Sadly there is far more support for distressed adults than distressed children and young people.